RSDCA

Many within our community have both conditions, Elhers Danlos Syndrome (EDS) and Complex Regional Pain Syndrome (CRPS). In fact there is a strong correlation between EDS, Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome(POTS) and the development of CRPS. It is incredibly beneficial to our community to have researchers analyzing this data and validating these findings! We as a community of patients have known this for years but it’s fantastic to have it backed by reaearch!

🧬 Is there a stronger link between Ehlers-Danlos syndrome (EDS) and Complex Regional Pain Syndrome (CRPS) than previously recognized?

A new study published in RAPM analyzed data from 54.2 million commercially insured patients to explore the relationship between EDS and CRPS.

🔍 Key findings:
📊 Patients with EDS had an ~11-fold higher proportion of recorded CRPS diagnoses compared with patients without EDS.
👩 Women represented the vast majority of patients with both EDS and CRPS.
🦵 CRPS Type 1 accounted for 76.8% of cases, with the lower extremity being the most commonly affected site.
📈 These findings highlight a strong population-level association between EDS and CRPS diagnostic coding in a national claims database.

💡 Recognizing this association may encourage earlier identification, multidisciplinary evaluation, and future research into the biological mechanisms linking EDS and CRPS.

📖 READ HERE: https://doi.org/10.1136/rapm-2026-107817

This is EXCITING! Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) is hosting their 1st ADULT WEEKEND RETREAT for those age 36 and above!! They heard us! Now go register!!!!

Date: October 2-5th
Location: Philadelphia
Cost: $275



https://m.facebook.com/story.php?story_fbid=1391863546314673&id=100064731216444&mibextid=wwXIfr

We heard you loud and clear! After years of successful Young Adult Weekend Retreats, we knew it was time to host a retreat for adults with CRPS.

The CRPS Connection: RSDSA's Adult Weekend Retreat - Strategies and Skills for Living with CRPS will take place October 2-5, 2026 in Philadelphia! This event is for adults with CRPS who are 36 and over: https://bit.ly/3QoEBUc

The CRPS Connection is a thoughtfully designed, in-person gathering focusing on strengthening practical skills, sharing lived experiences, and building meaningful connections with others who truly understand the day-to-day realities of CRPS.

Learn more about the weekend and register at https://bit.ly/3QoEBUc

CRPS is considered a form of dysautonomia by Dysautonomia International. There is also a link between CRPS and POTS (postural orthostatic tachycardia syndrome). POTS is a more common form of dysautonomia.

Do you have a service dog and a form a dysautonomia? If so, you are invited to participate in an online survey conducted by researchers at Lebanon Valley College. The purpose of this study is to survey people with dysautonomia who have service dogs about their experience. Completion of the online survey should take approximately 10 minutes.

**You must be age 18 and up to consent to take the survey. If you are under age 18, please have your parent/guardian complete the survey with you.**

Link to survey: https://lvc.qualtrics.com/jfe/form/SV_dnF2UxJ0hk21Y7s

Do you have a service dog and a form a dysautonomia? If so, you are invited to participate in an online survey conducted by researchers at Lebanon Valley College. The purpose of this study is to survey people with dysautonomia who have service dogs about their experience. Completion of the online survey should take approximately 10 minutes.

**You must be age 18 and up to consent to take the survey. If you are under age 18, please have your parent/guardian complete the survey with you.**

Link to survey: https://lvc.qualtrics.com/jfe/form/SV_dnF2UxJ0hk21Y7s

In 2016 the CDC imposed new guidelines that recommended physicians utilize strict practices when prescribing opioids such as limiting dosages, drug testing, and opioid contracts. Ater tracking outcomes for six years, the financial impact to physician practices was noted to be significant and there were and continues to be negative consequences to the pain community.

CDC Opioid Guideline Raised Cost of Pain Care — Pain News Network By Pat Anson The CDC’s 2016 opioid prescribing guideline not only had disastrous consequences for many pain patients, but raised the cost of treating them in primary care practices, according to a new analysis. Researchers at the University of Wisconsin-Madison studied the budget impact of four di

Merry Christmas to all our CRPS warriors community members and their caregivers, family members and friends! Remember to be kind to yourself today and in the next several days especially with the rain. The rain often effects many of us in the CRPS community! Enjoy your time with family and friends but know that it is okay to excuse yourself if you need to protect yourself and rest!

We wish all our CRPS community members and supporters that celebrate Hanukkah, a Happy Hanukkah!

SUPPORT GROUP:

For those in the Orange County area looking for an in-person CRPS support group for 2026, here is a schedule of dates for our upcoming meetings! Our next meeting will be on Tuesday, January 13th at 11:30 AM. Please RSVP prior to attending by texting (657) 333-5569 your first and last name!

**This group is intended for those living with CRPS and their caregivers/family members/friends! If you are a healthcare provider, attorney, or pain product representative please refrain from attending our meetings so as to respect the privacy of our members. You may send information to our group facilitator at [email protected].

Have a wonderful day celebrating with your family and friends! Remember to be kind to yourself today and in the days following! You are doing the best you can and you’re doing a fabulous job!!! We’re beyond grateful to have each of you in our community!!

Tomorrow, November 3rd is Color the World Orange Day! Remember to wear ORANGE to spread awareness about CRPS! Post pictures!